Calling all TNs

Valstim52

Welcome to all. I too wonder if it's something that was happening in our late teens and early adulthood that have made some of us more prone to be TN when diagnosed. I have 3 friends all in the last 5 years and all TN. hmmmmmm

Ag23

I want to join a clinical trial in NY - problem is that my BCBS New England Network doesn't cover any hospitals in NY. Has anyone ever had luck getting their insurance company to cover an out of network hospital as a in-network hospital for purposes of being in a clinical trial? My plan B is to contact the pharmaceutical company to see if there's some sort of compassion care they can provide, but I get nervous that I'm going to be paying a lot out of pocket for the trial (it's a 7 year trial), and I'm just getting back to work. Anyone have success or a similar situation?

TNpotato

Ag23 - Have you talked to a rep at your insurance company yet? The BC I have out here actually assigned me a rep to help me get stuff pre-approved for things that might not normally be covered (like parts of my extended panel genetic tests) and my reps a great contact to 'get the ball rolling' if I have questions. If you haven't talked to them, it might be worth the time?

Meadow

Jac and Scamp, hello! I missed your posts earlier, I wanted to say "welcome", and let you know, I hope you both find tons of encouragement and info here. Jac, I had chemo, surgery, rads too, this is the standard protocol for IBC. What is your diagnosis?

Meadow

TNpotato, Ag, and all, for this time, I am actually suggesting to Google something for some info. A new drug trial is making news, one of the drugs is IMMU-132, there are two more associated with TNBC trials, but I am still looking for the link. Last I read, this drug is showing improvement in tumors that previously did not respond well to chemo.

Valstim52

Welcome Jac and Scamp, I'm in the chemo, surgery and rads. 21 of 25 regular and 8 boosts.

Meadow

That's my girl, Val! Hello !

Allydp

I am so very said to hear the news about NotDoneYet. My deepest condolences to her friends and family.

hanley50

Hi ladies! Question -

I had neoadjuvant DD AC-T from 02/10/16-05/20/16. Had UMX (not my choice - wanted BMX but my insurance company seems to know better than me and my docs) with tissue expander on 06/16/16.

I did not have PCR - actually everything on pathology was about the same as what the imaging and biopsies showed in January (except that in addition to IDC they also found extensive DCIS that I didn't know about.)

I am being told that due to TN without PCR that I need radiation - which I did not expect and was not planning on.

What do you think? Other than TN without PCR I would not need radiation based on the normal criteria (Tumor <5cm (only 1.5cm), <4 possitive nodes (only 1 positive node), and I had clean margins.)

If I would of had surgery prior to chemo I don't think I would be in this situation because how would they know if I acheived PCR?

I have my simulation for RADS scheduled for next week (08/03/16) and keep second guessing this next step (I also am still getting fills and I do not have ROM under control - but am going to PT for this and was told I already showing Stage 1 Lymphedema.)

Any words of wisdom would be greatly appreciated.

Thank you!

Maryann

Editied to correct spelling!

LifeAloft

Hi Maryann,

I don't have any words of wisdom, but rads has always been in the works for me, since my TN diagnosis, but I also had one positive node. I'm not sure if that's why (the node), or the TN. I just had my lumpectomy so I'm waiting to get the rads ball rolling. I did not get a PCR either, I'm not sure what was left yet, but my surgeon said "very little", but I'm definitely off to rads next.

Best wishes to you! Keep us posted.

Kelly

LoveMyVizsla

I'm having my rad sim and rad onc consultation on 8/3 also. Rads have always been on the schedule, I assume because of the TN status. My question is, how long a period did most of you have between surgery and rads? I want to be healed pretty well before doing more damage to my skin. And I'm still recovering from a nasty taxane rash too.

Kathseward

great idea! I am in awe of the ladies on this site! as previously state I was diagnosed 3 weeks ago and I am still absolutely terrified. Have had a lumpectomy and chemo in a week but I cant get fear. I alternate between tears and this strange hyped up state and it is really doing my head in!

ScotBird

Hi I had LX and PCR and will start rads tomorrow which will be nearly 7 weeks post surgery. Am happy to do the rads as was told by oncologist that after rads my statistical chances of a recurrence will be lower (only a percent or two, but I'll take that). XX

Lookingforward66

Hi to all,

So I don't have to list you all that are concerned I'll just say this.

I was diagnosed in Dec. 10, 2012. Double mastectomy. Visable in left breast, was starting up in right (just a few cells). Was positive in one node.

Started AC. 2 infusions & had to stop because of chemo reaction. Almost died. Just decided quality of life over quantity. Since then, over 3 years, I have had no signs of Cancer. Just saw my BS & MO recently. Had PET scan end of May am NED. So don't go crazy. I did not have radiation either. It is doable. Don't stress out (if can) life is good. I go to Sylvester Cancer Center in Miami Florida. I also go to psychologist connected to Sylvester, to voice my concerns & help keep my head in positive thinking. I will be 4 years in December with only 2 AC treatments. This is just to let you know that life can go on without all the stuff they throw at us.

I had good margins & only just started in one node.

My PET scan after surgery was clear. So I don't look for cancer but if comes back I'll deal with it best as I can. Just thank Good Lord for every day. After all I could be killed in a car crash (especially on I-95) tomorrow. Nothing is written in stone. Just do the best I can each day given.

Hoping this helps. Don't fret. It is survivable.

Marsha

Cathytoo

Marsha...thank you SO MUCH for your post. I might turn it into a poster to hang on my wall so Ican look at it every day‼️ I wish for you what I wish for myself and all our TN sisters...A LONG HEALTHY LIFE FILLED WITH LOVE AND HAPPINESS.

Lookingforward66

Cathytoo

Just wanted all of us to take this one day at a time. Life is not over as long as we do whatever we can every day to make it our best day. That is why I took the post name "looking forward". Power of positive thinking. It works.

Marsha

LillieRose

Hi All,

I don't come here much anymore. I'm trying to not think cancer 24/7 and sometimes the boards scare me

But I promised myself that I would check in with good news and give the newbies hope 💛 I clung to the good stories I read while going through treatment. They gave me so much hope that I to could beat this...

At 30 years old when my daughter was just 5 months old I got the news I have breast cancer. Of course I later found out it was TN. I was devastated... I thought for sure this was it.... But here I am. July 23rd was one year since my last chemo. I know I have a long road but I never thought I'd see another summer. Life is pretty much back to normal. I am enjoying watching my daughter grow and loving feeling almost myself again!

I am currently training to walk 26.2 miles this September for the Jimmy Fund. All the money I raised will go to research for woman with Breast Cancer under the age of 40.

I tried to read back and it looks like the same talks are still happening. I had 8 rounds of weekly Taxol chemo, 4 rounds of dose sense AC and then a BMX. Due to my PCR and no nodes I skipped rads. I was at Dana-Farber and I got a second opinion at MGH. I know we are all scared and I know how hard it was for me not to do rads but all the docs agreed it wasn't needed for my case. I think it's important to remember we are all different people with different tumors... Not one case is the same so we have to trust in the doctors and not compare ourselves to others.

Good luck all 💛 Be well

blamoms

I just started radiation today. I have 1 down 19 more to go. I admit when I found out it was triple negative I was scared. Everything you read about it is so negative. I am taking it one day at a time. AC chemo was rough but I got through it, Taxol was easier new side effects but I got through it. It's not easy at times but neither is life. I have learned to appreciate life more and try not to get stressed about the little things We are going to get through this ladies. Life is tough but so are we

Valstim52

hanley50, I'm no expert but I would want to throw everything possible at TN while I have the opportunity, especially not having a pcr. Just my opinion.

I'm on #21/25 then 5 or 8 boosts depending on what my Rad Onc says.

TNpotato

Meadow - thanks for the info on IMMU-132! My hospital is actually part of that trial so I will DEFINITELY be asking my MO about that!

hanley50 - I always knew rads were on the lineup for me, so I expected it. Always a shock when you think "I'm almost done..." and the docs are telling you "ONE more thing..."

I've read several studies that show less risk of recurrence for those who get chemo + rad as opposed to just chemo for those without pcr, but truly every case is unique and so much depends on node involvement, size of tumor, etc. I have always thought of rads as the "final mop up" of cancer cells that might be remaining. (that's actually how my MO explained rads and chemo to me)

And as ScotBird said above: "Am happy to do the rads as was told by oncologist that after rads my statistical chances of a recurrence will be lower (only a percent or two, but I'll take that). XX" AMEN! lol

Ag23 - Have you had any luck getting into that trial or with the insurance company? (sending positive thoughts your way!)

Lookingforward66 & LillieRose - Thank you both for HOPE!! ) N00bs like me sooo appreciate you taking the time to let us know there's a light at the end of this tunnel!!

TulipsAndDaffodils

Maryann,

I think you've gotten some great advice/thoughts above. I know it stinks to have another hurdle thrown at you when you think you're done (my own treatment has extended 6 months longer than originally anticipated, because I also did not get a pCR and chose to do 6 months of additional chemo--Xeloda--to reduce my risk of recurrence). And it is true that if you did surgery first, you wouldn't know that your tumor wasn't very responsive to the chemo, so they might not have had you doing radiation. But I think we should look at this knowledge (that the chemo wasn't totally effective on our tumors) as a blessing--it gives us the power & knowledge to do a little more to fight/prevent recurrence. We don't want to get to stage 4 if there's something we can do now to prevent it. It is absolutely true that some people get lucky and don't need a lot of treatment to stay cancer-free, like in Marsha's case above. We love to hear those stories! But Marsha's cancer may have been extremely sensitive to AC--those 2 treatments might have knocked out any stray cells, we'll never know exactly what happens in those cases. You could already be cancer-free at this point, but perhaps not. No way to be sure. The lack of pCR is definitely disappointing--it's at least an indication that the chemo didn't kill all of our cancer, and if you had a positive node (my nodes were negative, but I did have lymphovascular invasion, so probably we're in vaguely similar boats), I think there is a reason to at least consider the possibility that some cancer moved around our bodies). I think it makes sense to listen to your doctors (by all means, get a 2nd opinion if you are on the fence), and if they think the rads can help you, you should really think about it.

As far as radiation goes, of course everyone is different, but I was shocked at how easy it was for me. It was annoying to drive there every day, but as far as what happened to my skin, it wasn't bad AT ALL, no blisters or any open skin or anything like that. Just what looked like a sunburn in the last 5-10 days. Within a week or two, you couldn't even tell where I had gotten it, the skin feels exactly like normal and the redness disappeared. In my case, the anticipation was WAY worse than the reality. Of course, I was thrilled to finish it, because it's a pain in the neck to go everyday.

As much as I wanted to be done and not do extra chemo, I do feel so much safer having done this extra treatment. (I did 12 Taxol/Carbo, followed by 4 ACs, then lumpectomy, then 33 RADS, then started 8 three-week rounds of Xeloda. I'll be finished at the end of August, woohoo!!).

Good luck with your decision, I know this is a difficult time!!!

Tulips

Luvmydobies

Hey guys, I see my Oncologist Monday, August 1st for my six month checkup. I always get so nervous around these visits. This is the first time I've gone six months without seeing him. I'm starting to notice every ache/pain, shortness of breath, etc. I'm thinking and of course hoping it's all anxiety because of the upcoming checkup, and asthma because of the heat/humidity here in NC. I haven't read every post lately but I still get nervous that I had surgery first and no radiation. They told me when I started treatment that they didn't recommend rads because of clear nodes but I still have the what if thinking going on! Ugh. Anyway, I know it doesn't do any good to fret and I can't go back and change the treatment plan so I have to just hope and pray for the best. I've got to start going and working out because I've gained some weight that I didn't need to and I haven't been eating well lately and that worries me a bit. Hopefully my Onc won't get onto me too much for gaining. Ugh, sorry for the rambling, but pleasesay a prayer for me for Monday. Love to you all! XOXOXO!!

Cathytoo

Luvmydobies....You have my prayer for a great visit on Monday. Please report back. ❤️XXO

Meadow

Luvie, I am sure you will get a good report, just try to relax, trust your treatment plan worked. We all get fearful for a time now and the, hoping you feel strong and confident soon.

Ally, yes, Notdoneyet's passing is so upsetting, hugs to you my dear friend.

Valstim52

Luvmydobies we are in your pocket for a great visit. As a newbie I see you are 3 years dx, congrats and I pray I get there too.

Valstim52

Sending waves Meadow and Cathytoo

6feetover

...delurking and chiming in to do the same! *BIG HUGS* to all! You're always on my mind, even though I'm rarely on the forums!

**********************************

Mammo and ultrasound scheduled for Aug. 1. In a bad way mentally/emotionally. I noticed some dried discharge on the nipple of the LX breast last weekend, and flipped. Breast surgeon not overly concerned, but will see me on Aug. 2. Still can't work (it's been over a year, now) because of ongoing, severe, chemo-related/induced/exacerbated SEs, including bilateral De Quervain's. Applied for SSDI again, and will need a lawyer this time around. *Sigh* Hope you wonderful folks are doing better than I am!!!

anotherNYCGirl

Thanks for your post Marsha!

Luv, - think GOOD thoughts!

Hugs to all here,

from hot, sticky nyc =/ (I wish it would SNOW!

Meadow

another, yes, bring on the snow! Lol.

((((Val))))

For those who are interested, there is a thread started called IMMU-132, started by someone in the trial. Very interesting drug trial for TNBCERS. Hope reigns!

Stupidboob

Hey Gang,
  Just dropping by to say hi.................as you all know, I get so overwhelmed with having to scroll through all the messages (wish they would fix that).   I just wanted to say that as of April 2016, I am still clear........Thank God.

I am available for anyone who might want/need to talk to someone in person who truly understands.  If you want to chat please send me a personal message because I get those, but I don't scroll the pages. 

My thoughts and prayers are with you all and I think of you all often.